Articles / 2013

After being diagnosed with brain cancer, Salvatore Iaconesi wanted a cure. He wanted support and advice.

So he put his medical records — databases, spreadsheets and images of the tumor — online and asked people to react. The material went viral: 500,000 people responded.

"Together, we were able to form a strategy for my cure," Iaconesi said Thursday at a national conference on approaching medicine differently. He solicited online advice on how to heal psychologically, socially and emotionally.

"I was interested in any kind of a cure," said Iaconesi, who ultimately underwent surgery that he said removed all of the tumor.

As the artist/robotics engineer/computer hacker told his story on an opera house stage at the Kennedy Center in Washington, D.C., nearly 100 people watched in a darkened auditorium at the Museum of Ventura County in Ventura. Nurses, doctors, retirees and high school students gathered for a simulcast of Tedmed, an annual conference that advocates new ways of thinking about Down syndrome, bacteria, medical technology and every other aspect of health care.

Sue Austin came to the stage in a wheelchair.

"I'm the most mobile person in the room," said the disabled performance artist who uses a specially designed chair to swim — well, really to fly — underwater. She urged people to rethink what they may see as limits.

"Maybe your cages aren't physical, but I guarantee you they are there," she said. "Maybe you want to get out of them. Maybe you want to turn them into a vehicle."

The conference is put on by a nonprofit, TED, that dedicates itself to spreading ideas. On Thursday, those concepts included ways of balancing new technology with practices that already work and encouragement for patients to demand copies of their medical records.

Jessica Richman urged people to become citizen scientists. She leads a project that explores the effects of the trillions of microscopic organisms that live on human bodies. Called uBiome, the project provides untrained citizen scientists with the ability to use DNA sequencing tools to examine their microbiomes and compare them with others.

The project's raw data comes from its contributors.

"We want all of your poop, from everyone," she said.

The actual conference began Tuesday. Thursday's simulcast was put on by Community Memorial Health System. People walked away talking about such topics as the cost of care and computer systems that can push providers away from patients.

Christian Reed, a senior at Foothill Technology High School in Ventura, has to deliver a speech on the importance of learning CPR. The swimming pool lifeguard wants his talk to be as passionate as what he heard Thursday.

"People die from not knowing CPR," he said.

Dr. Victor Pulido, a Ventura family-practice doctor, came to the simulcast because he knows doctors don't have all the answers and sometimes think only through their frames of reference. He walked away thinking about patients.

"I should be much more open to them being involved in their care," he said.

Lesley Kirk works as a neonatal intensive-care nurse at Los Robles Hospital & Medical Center in Thousand Oaks. Her father has Alzheimer's disease. Her mother has cancer.

She wants to know how growing technology can be balanced with human interaction. She wants common sense to be preserved in medicine. She wants to know how she can help her parents.

"I think I am involved," she said. "I think something like this will help me think of how I can be better involved."